SM Community Stories: Conversations and Insights
Real SM stories. Real support.
Living with systemic mastocytosis (SM) can feel overwhelming—but you’re not alone. Find real stories from the community and discover ways to connect, find support, and access resources to help navigate life with SM.
Sarah*
Living with ISM
"Until I started getting treated for SM, I didn't realize how very sick I was—it was such a relief to have a name and be able to go in and find out more about the condition, how to manage the symptoms, and identify what's causing them."
This individual received compensation from Blueprint Medicines for sharing their experience living with systemic mastocytosis.
Mental health matters in SM
Living with SM impacts more than the body—it shapes one’s emotions and relationships. Feelings of isolation, anxiety, and frustration can be just as challenging as the physical symptoms, and can be difficult to navigate alone1—and these challenges matter.
In this webinar, Janice—a psychologist living with SM—and her daughter, Jenny, speak candidly about the deeply personal and sometimes overlooked emotional aspects of living with SM. Together, they share insights on managing mental well-being, nurturing meaningful relationships, and navigating the complexities of family life with SM.
Tune in to the conversation to learn about their experience.
Kristine†
Living with ISM
"If I can take my experience with this disease and use it to encourage someone with SM, I ask, 'Why not me?'"
This individual receives compensation from Blueprint Medicines for sharing their experience living with systemic mastocytosis through the Blueprint Medicines SM Ambassador Program.
Communicating with a purpose
Talking about SM isn’t always easy. Finding the right words to explain symptoms to loved ones or discussing a diagnosis with your care team can be a challenge—but you don’t have to do it alone. Clear, confident communication can make a world of difference, and support is available to help you along the way.
In this webinar, you’ll hear real experiences and practical advice from individuals living with SM, a dedicated caregiver, and a doctor experienced in treating mastocytosis. Together, they share strategies for effective and meaningful conversations that can help you feel heard, understood, and more connected.
We’d love to hear from you
Your voice can make a difference. Share your experience with SM to join the conversation.
You may choose to share your story; however, before doing so, please keep in mind that by choosing to share your story you are disclosing your own personally identifiable information, including your name, email address, personal health information and any other personal information you include in your story with Blueprint Medicines. You understand that your participation is not a guarantee that your story will be selected. You will be contacted by email if we would like to use your story and will discuss with you how it may be used.
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Share your storySupport organizations
The Mast Cell Disease Society (TMS)
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Food Allergy & Anaphylaxis Connection Team (FAACT)
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Patient Power
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Allergy & Asthma Network (AAN)
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National Organization for Rare Disorders (NORD)
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WebMD Education | Medscape
Visit siteThese independent resources are included as a reference only and do not imply endorsement of Blueprint Medicines or its products by the groups listed. Blueprint Medicines is not affiliated with and does not endorse any particular independent advocacy group. We make no guarantees about the accuracy of the information provided on these websites or the quality of support provided.
- Jennings SV, et al. Immunol Allergy Clin North Am. 2018;38(3):505-525.
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